Read and learn what happens when you don't comply with DS lifestyle requirements

A DSer on a FB group very kindly granted permission to post this VERY important cautionary tale about what can (probably WILL) happen to a noncompliant DSer. This is not the author's story, but that of a family member.
"(A family member) had this surgery about 16 years ago. he wasn't good about keeping up with information and never supplemented properly. His laundry list of health issues is so long, he's lucky to be alive.
He developed osteoporosis at about five years i...n, which was detected when he had a seizure and broke his back the first time. The osteoporosis in his spine is so bad now, that he's had several back surgeries and broken his spine multiple times. He now has a permanent pain pump implanted, and is stooped very badly and has to use a walker.
His endocrinologist said that my dad had the lowest levels of D he'd ever seen. They were almost negligible.
He's also dealt with leg weeping and sores due to low blood albumin (too little protein), and low blood salt, among other things. I'm sure he's deficient in just about everything. Honestly, he's very lucky to be alive at this point, and one bad fall could kill him.
He's better about supplementing calcium and vitamin D now, but that's about it. He still doesn't take care of himself well.
That's my cautionary tale to everyone. This surgery WILL ruin your life and possibly kill you if you do not take/eat what you are supposed to, no ifs, ands or buts."

That is a sad tale indeed. I feel for the man. I finally started taking 100000 IU DRY D....I had NO idea I would need that much D when I began this journey. I have some pain issues also, and see a pain clinic every 3 months, yet I had prior trauma from a car accident. SOOOOOO important to keep up with supplements. I hope he can get some family and friend support and get as healthy as possible from here on out.

It has to be dry d3, not the RX oily stuff they prescribe.

I had a hard time convincing my Primary Care this was sane until we redid labs and he was amazed I didn't OD on D. Now he understands the DS and malabsorption and complications.

I just joined today, and I am so glad that I found this thread. I needed to read what is being said here -- don't wait for doctors to fix your deficiencies. Because my original surgeon is too far away for me to travel (I'm disabled), my follow-up care has been handled by my local PCP. Years ago, my vitamin D tanked at 4, and he (predictably) put me on rx Vit D which did absolutely nothing. I insisted that he let me educate him about water-based vitamins, and he recommended limiting dry D to 5,000 daily because he was concerned about toxicity in higher doses. I foolishly followed his advice, thinking as long as I took dry D I would be okay. A few years later, still deficient, I consulted the only nearby bariatric surgeon. Unfortunately, he did not do DS and, in fact, he scolded me for having had such a drastic procedure. He did, however, advise me to add 50,000 three times a week. On that regimen, my Vit D level has increased (very, very slowly) to 24. All this time, my has calcium has remained normal, which I now realize means my body was leeching calcium from my bones. Dexa scan a few years ago was still normal.

After researching the consequences of long-term Vitamin D deficiency, I became concerned about PTH abnormality. So, I have an appointment with an endocrinologist next week. I was planning to wait to increase my Vit D until he made his recommendations, but now I'm thinking I should increase it immediately.

I have a similar story relating to iron deficiency, but won't go into detail just now. Suffice it to say, doctors' advice has proven to be inadequate at best, leaving me seriously iron deficient with sky-high TIBC and very low ferritin. Dr's are telling me not to bother taking iron as long as H&H are within normal limits, I can have infusions if they drop. I'd like to avoid that if I can.

So, these cautionary tales mean a lot to me. Time to do what I think is best!

I insisted that he let me educate him about water-based vitamins, and he recommended limiting dry D to 5,000 daily because he was concerned about toxicity in higher doses.

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As long as you register IN NORMAL range, does the dose it takes to keep it there really matter?

I got told by a PCP I was interviewing that I did not need to be on Cytomel (a thyroid med that works with Synthroid). I told him that as long as my reading was normal, apparently I needed it. BTW, he didn't pass the test.

As long as you register IN NORMAL range, does the dose it takes to keep it there really matter?

I got told by a PCP I was interviewing that I did not need to be on Cytomel (a thyroid med that works with Synthroid). I told him that as long as my reading was normal, apparently I needed it. BTW, he didn't pass the test.

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I see your point now, but I didn't back then. He was happy with the fact that my D level was increasing, albeit slowly, and I thought he knew best.

BTW -- Apparently, from early on I didn't have a good understanding of the amount/type of supplementation needed, and neither did my PCP. I had problems with low D and calcium starting at just 2 years out. Found an old diary I kept for a few years after WLS. In 2002 I wrote:
Lab work came back showing a problem with very low calcium, phosphorus and vitamin D. The doctor says I'm at risk for osteomalacia (bone softening) if I don't get this turned around. Started on the Vita-4-Life program which is especially designed for WLS patients with malabsorption. [I now know this program didn't supply anywhere near the dosing I required.]The lab work will be repeated in 3 months and I'll know then if these new supplements are working [they didn't!]. Also drinking orange juice with added calcium, eating more dairy products, and using Viactive which has calcium and added vitamin D.

So it's been a long, long time since my D level was within normal limits. I just hope my ignorance hasn't caused my body irreparable harm.

I see your point now, but I didn't back then. He was happy with the fact that my D level was increasing, albeit slowly, and I thought he knew best.

BTW -- Apparently, from early on I didn't have a good understanding of the amount/type of supplementation needed, and neither did my PCP. I had problems with low D and calcium starting at just 2 years out. Found an old diary I kept for a few years after WLS. In 2002 I wrote:
Lab work came back showing a problem with very low calcium, phosphorus and vitamin D. The doctor says I'm at risk for osteomalacia (bone softening) if I don't get this turned around. Started on the Vita-4-Life program which is especially designed for WLS patients with malabsorption. [I now know this program didn't supply anywhere near the dosing I required.]The lab work will be repeated in 3 months and I'll know then if these new supplements are working [they didn't!]. Also drinking orange juice with added calcium, eating more dairy products, and using Viactive which has calcium and added vitamin D.

So it's been a long, long time since my D level was within normal limits. I just hope my ignorance hasn't caused my body irreparable harm.

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If your serum calcium is low, wouldn't that mean that your PTH, which "hijacks" calcium from teeth and bones, has run out of calcium to hijack? IOW, once the calcium gets low...I'd be really afraid.

I cooperated with my PCP for one month, as she tried to convince me to use Rx Vit D. At the end of the month, as tne numbers tanked, I announced that I was going back on 150k of Dry D per day...and she thanked me for humoring her.

If your serum calcium is low, wouldn't that mean that your PTH, which "hijacks" calcium from teeth and bones, has run out of calcium to hijack? IOW, once the calcium gets low...I'd be really afraid.

I cooperated with my PCP for one month, as she tried to convince me to use Rx Vit D. At the end of the month, as tne numbers tanked, I announced that I was going back on 150k of Dry D per day...and she thanked me for humoring her.

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My calcium was low at that time (2002). It has been in the low normal range in more recent years. Last month it was still in normal range, and Vit D was higher than previously, but still only half of normal. Nevertheless, as you say... I am really afraid that there is parathyroid chaos going on in my body. That's why I will be seeing the endocrinologist next week.

My calcium was low at that time (2002). It has been in the low normal range in more recent years. Last month it was still in normal range, and Vit D was higher than previously, but still only half of normal. Nevertheless, as you say... I am really afraid that there is parathyroid chaos going on in my body. That's why I will be seeing the endocrinologist next week.

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Uhm....no, I think.

Your parathyroid is PROBABLY doing what it should. Did you read the blurb from Dr. Norman? Too many doctors think we have a parathyroid problem when what we REALLY have is a calcium absorption problem.

Do NOT let some doctor who doesn't understand WHY your PTH may be elevated scare you into unneeded surgery.

Your parathyroid is PROBABLY doing what it should. Did you read the blurb from Dr. Norman? Too many doctors think we have a parathyroid problem when what we REALLY have is a calcium absorption problem.

Do NOT let some doctor who doesn't understand WHY your PTH may be elevated scare you into unneeded surgery.

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Thank you for the caution. I have downloaded that webpage and will take it with me to the endo.

i'm just on page one of this thread and i'm just starting to research the in's and out's of have a DS revision, and not a SIPS, but can anyone tell me a ballpark figure on how much vitamins cost per month? as i'm becoming quite nervous about it...

you would think someone would have invented and all in one vitamin powder for DS'rs by now... no?

do we have to buy each and every one of the vitamins we will need in an individual bottle?

i'm just on page one of this thread and i'm just starting to research the in's and out's of have a DS revision, and not a SIPS, but can anyone tell me a ballpark figure on how much vitamins cost per month? as i'm becoming quite nervous about it...

you would think someone would have invented and all in one vitamin powder for DS'rs by now... no?

do we have to buy each and every one of the vitamins we will need in an individual bottle?

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The actual cost varies from person to person based on what we actually need per our lab work. But buying on sale, in bulk, etc makes since. Find the cheapest SOLID generic Centrum equivalent you can. I take the Kirkland (Costco) Daily Multi, three a day for a cost of less than .10 cents a day. And I honestly do not know what the budget is monthly as 1) there are two DS'ers in this family and 2) we buy when we need to buy unless something is on sale like the Citracal at Costco and then we load up. It's a given and like protein, not optional.

The reason the all in one would never work...even tho most of us here are DS'ers, EACH one of us varies in what we need. Example, I do not yet need ANY A, E, B (of any kind), copper or zinc (okay, except what is in my multi). Others need those. Also we each vary in how MUCH we need so an all in one wouldn't work on that front...can't be adjusted. Only if we were exact clones of each other would an all in one work. If you ask 50 DS'ers what they take, you will get 50 DIFFERENT answers. Many are common such as the multi, D, and calcium but even those vary in amount person to person.

No, you do not have to buy individual bottles but honestly it is cheaper that way and you can tailor your needs to YOU and not waste money on stuff not needed. Vitalady has the pre-packs but like mentioned in the above paragraph, I don't need A, E, B's copper, or zinc so why use a pre-pack with those in it?

i'm just on page one of this thread and i'm just starting to research the in's and out's of have a DS revision, and not a SIPS, but can anyone tell me a ballpark figure on how much vitamins cost per month? as i'm becoming quite nervous about it...

you would think someone would have invented and all in one vitamin powder for DS'rs by now... no?

do we have to buy each and every one of the vitamins we will need in an individual bottle?

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Whatever the cost it's still less expensive than being morbidly obese and the related health consequences.

i'm just on page one of this thread and i'm just starting to research the in's and out's of have a DS revision, and not a SIPS, but can anyone tell me a ballpark figure on how much vitamins cost per month? as i'm becoming quite nervous about it...

you would think someone would have invented and all in one vitamin powder for DS'rs by now... no?

do we have to buy each and every one of the vitamins we will need in an individual bottle?

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I buy each separately, often using different brands and suppliers. The doses have changed over the years, as well as which I need and don't need. I can tell you the sources of the vitamins I take, if it helps, but let your doc and labs determine which you need, when, and how much of each. I don't need all of these all the time. Follow your docs advice, but this is my typical shopping list.
Biotech is my source for 50,000 IU dry vitamin D3 (and 5,000 if you need less) and 25,000 IU dry vitamin A (https://www.biotechpharmacal.com/) Solaray has dry vitamin E, 400 IU. Feosol comes from Pharmapacks. Costco has calcium citrate 500 mg with magnesium and small amounts of other stuff. Twin-lab has zinc 30 mg and vitamin B Stress Complex. I take centrum silver. At Amazon, I get Relentless Improvement K2 15 mg (not mcg) as K2 menatetrenone.
Look to see how many pills constitute the dose, since sometimes it is two pills to get what's on the label. ( I use two, two-week pill sorters and fill them up, so I have a month's worth sorted and notice if I am running out. The exception is calcium, which is by itself in the kitchen and taken with meals throughout the day.) Suggestion: type up all the vitamins, doses, and sources to give to your primary care doctor and various specialists along the way, since they will want to know and it's a pain to go through the list every time. As much as I like to shop at local businesses, I buy most online and get free shipping.
It seems like a pain in the ***, but you get used to ordering them regularly, sorting them, and it becomes a routine. The cost is about $75 four times a year, since I order in batches and try to get BOGO when it is available, but yours may be less, especially early on.

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